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Diet modification, oxalates and salicylates were the key to cure me.

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  • Diet modification, oxalates and salicylates were the key to cure me.

    Hi all,

    I just wanted to share my story here to try and help others suffering with this terrible disease.

    I have only recently started posting having finally achieved remission after three long years. I spent hours and hours however when going through IC reading these forums. They are such a support and helped me greatly. I am incredibly grateful to those that helped me by posting their story so hopefully mine will be useful to others too.

    I was 34 when IC hit and my god it sucks. I was going 25+ times a day and 6 or 7 times over night at my worst. The pain, pressure, urgency and frequency were relentless all day every day. The pain was the worst symptom of all. I thought if I have to live with this pain and discomfort forever I couldn't do it. I just felt like I wanted to cut my bladder out of my body to get relief.

    I also after a while developed incredibly sore, flaring gums and non-stop itchy eyes which I was sure was connected.

    The medical profession agreed it was IC and just tried me on a few drugs I found that none of them helped at all. They said that diet can effect it but that was about as much information as I got!

    Determined to fix myself I started trawling the web for answers. I was in so much pain I was willing to do anything.

    I started with the IC diet and tried a range of supplements none of which helped at all. I kept a food and pain diary but it was so confusing and symptoms although always there came in waves of severity and pin pointing what was causing the issue was impossible. After three months I was no better at all.

    I then moved onto the alkaline diet as I had read that this had helped many with IC. I cut more out than the IC diet and had spinach and kale shakes three times a day. It made me worse!

    The desperation continued so I went even more extreme and moved onto the Auto immune Protocol (AIP). This made complete sense. Cut out anything that is well known to cause digestive issues.......gluten, lactose, nuts, seeds, etc. Pretty much everything on the diet is considered a super food so surely this would make me better.

    I ate sweet potatoes and pork burgers for breakfast and lunch and then sweet potatoes with loads of veg and a meat for my evening meal every day for six months. Everything I ate was fully organic and I did not have anything with preservatives etc as they made me flare. I tried coconut and avocado to get calories in but both made me worse so I quit them. I lost a stone and a half and I was lean anyway. I ended up drinking nothing but water. All this hard work and dedication and I was still just as bad as before! The depression when being so dedicated, losing all the food and drink that you love and feeling like you were getting nowhere was unbearable.

    I went to see a nutritionist to see if he could help me as everything to this point had been from research online. He suspected that if I was still having problems after a year on these diets that I might have an oxalate and/or salicylate issue. I had heard these terms a couple of times through the research that I had done but had never made the connection. I realised that the diets that I had been putting so much effort into for the previous year were absolutely jam packed full of oxalates and salicylates. I hadn't then cut out 'everything' that could cause digestive issues!

    Oxalate and salicylate level food lists are limited and quite unreliable. My nutritionist then suggested I go on the carnivore diet with a specific supplementation regime to support. This is an extreme diet but I was willing to try anything. It involves eating nothing but meat and a bit of very high fat dairy (if you feel you do not have an issue with dairy). Both meat and dairy are near 0 oxalate and salicylate content so this was the perfect test of his theory. I also changed up all of my products to salicylate free.

    The results were immediate and amazing. For two weeks I was 90% to 95% symptom free!

    Unfortunately this didn't last as it was as I found out the 'honeymoon period'. Oxalates build up in the body when overloaded. When you reduce/eliminate them from your diet the body then begins to detox and begins a process of 'dumping' them. This brought my IC back with a bit of a vengeance for dumping periods.

    I have been on the carnivore diet for over nine months now. The good periods over time extended and extended and the dumping reduced and reduced and I am now finally symptom free. It has been a very long and hard road but totally worth it to get to where I am. I have put the weight I lost back on with lean muscle rather than fat and I feel great.

    Clearly from reading all the forums there seems to be loads of different root causes of peoples IC but oxalates/salicylates were certainly mine. I am convinced that for many (but certainly not all) IC is connected to a digestive issue with something causing inflammation through the system. The difficulty is identifying what that root cause is. For some it may be the more traditional things like gluten, lactose, nuts, seeds etc and the AIP diet may actually be brilliant to allow healing.

    I think the IC diet is worth a try but it really is limited as there are still so many foods that could be causing digestive distress. If you have tried the IC Diet like I did with no success it may be worth looking at other more in depth elimination diets. I read some people saying that they are fasting eating nothing for periods. I can understand this to remove the pain but I think there is a diet out there to tackle the disease for everyone where you can still get enough daily nutrition to live well......it is incredibly difficult to heal the system if not getting enough sustenance.

    I think the carnivore diet could be a great option to try for many with IC as it eliminates all but one food group (if trying without dairy at first) but still allows you to get enough calories to live. This makes identifying the problem far easier. If after two or three months on the diet you have seen no IC improvement it is an easy conclusion.....either meat is causing you IC or food is not a root cause at all and you can look at other options. I don't think that I have read that fresh organic meat is anyone's root cause but who knows.

    I would not do it forever. In the short term the suggestion from limited research is that it is actually fine health wise but who knows long term. I want to give my body another few months to fully heal and I will then begin carefully adding low and then medium oxalate/salicylate foods back in to see how I do and have as balanced a diet as possible.

    I went through and learnt so much on my healing journey I have just created a blog to try and help others. I have linked in some pages below to try and help:

    Homepage - https://icdiets.com/
    Info on oxalates - https://icdiets.com/what-are-oxalates/
    Info on salicylates - https://icdiets.com/what-are-salicylates/
    How to test for oxalate/salicylate issues - https://icdiets.com/testing-for-oxal...cylate-issues/
    Info on the carnivore diet - https://icdiets.com/carnivore-low-histamine-diet/

    If anyone has any questions please feel free to contact me as happy to try and support.

    Best wishes to you all,

    James
    Last edited by ICNDonna; 04-02-2019, 09:48 AM.

  • #2
    I'm glad you have found some relief. I absolutely know that diet is important to me --- at the time I was diagnosed, not much (if any) thought had been given to diet --- it took me quite a while to find that some foods and drinks increased my symptoms. When I first saw a list of potentially problem foods, my problem foods were all listed --- After 44 years with IC, there are still some things I have to avoid, but it's a small price to pay to feel good.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Hi Donna,

      Thank you so much. Yes I completely agree....i think finding the right diet can be a help for many so I hope this post is a support to others. I am hoping to sensibly add some foods back in but to be fair I would stay fully carnivore forever if I had too if it meant staying pain and discomfort free.....a small price to pay as you say compared to debilitating IC symptoms.

      James

      Comment


      • #4
        The IC diet did work for me and I went into remission for about 2 years and then fell off the wagon, thinking I was cured. It wasn't as easy to get back to and I've been struggling with limiting food again, although I have avoided acidic foods as much as possible. My understanding though is all animal products are considered acidic too. I've often wondered if there are any vegans on this forum that have IC. If not, there could definitely be a correlation. However, I think it's also everything else that has been added to our food over the years that the FDA has approved (antibiotics, growth hormones, acids, etc.) that is really concerning. I have done baking soda in warm water and think it's an excellent idea. Garlic was also my go to food but doesn't seem to work as well any more.

        Comment


        • #5
          There are people with IC that WERE vegan but decided that that lifestyle actually may have contributed to them getting IC. A big part of the AIP diet is consuming a lot of bone broth that supposedly heals your leaky gut. The hard thing about this disease is that it can be different for everyone. I have had IC for 14 years and have been in and out of remission. Longest period of remission was 3 years. Doing the AIP diet through my naturopath right now. I am happy you found your answer JPD!

          Comment


          • #6
            Originally posted by Sammy77 View Post
            The IC diet did work for me and I went into remission for about 2 years and then fell off the wagon, thinking I was cured. It wasn't as easy to get back to and I've been struggling with limiting food again, although I have avoided acidic foods as much as possible. My understanding though is all animal products are considered acidic too. I've often wondered if there are any vegans on this forum that have IC. If not, there could definitely be a correlation. However, I think it's also everything else that has been added to our food over the years that the FDA has approved (antibiotics, growth hormones, acids, etc.) that is really concerning. I have done baking soda in warm water and think it's an excellent idea. Garlic was also my go to food but doesn't seem to work as well any more.
            Vegan can be a huge challenge even without the added challenge of interstitial cystitis --- I have family members who are vegan. I could probably do it, but I do pretty well with meat products --- I'm diabetic so that adds more challenge. I might give it a try some day, but for IC, I think the IC diet is a good place for me.

            I'm always happy to see someone is doing okay in spite of IC.


            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment

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